1. SAFA Network: Webinar on Self-Advocacy
August 3, 2011
1:00 pm – 2:30 pm Central
Welcome everyone to the call today, and welcome our newest member Nick Otness who is from Alaska. Ask Nick and his support person to introduce themselves and ask why they wanted to be a part of SAFA.

2. Key Points The Results from the BFSS Survey are In!
SAFA May Be Coming to a Conference Near You!
Create One Personal & One Group Goal
Future Webinars (Best time of day??? Best topics???)

3. Here’s What We Asked You…
Did you like the topics presented at the SAFA
workshops?
Did you feel free to share
your ideas and experience(s)?
We had 13 people total respond to the survey. Thank you for giving us your input!
Did you like the topics presented at the SAFA workshops?
Everyone said yes. 
Did you feel free to share your ideas and experience(s)?
 Everyone said yes 

4. More Questions… Did you have plenty of opportunity to
meet and talk with other SAFA advocates?
Did you have plenty of opportunity to meet and talk with other people at the conference?
Would you like to come back to the SAFA
Network workshops at the BFSS conference next year?
Did you have plenty of opportunity to meet and talk with
other SAFA advocates?
No – 4 (31%)
Yes – 9 (69%)
other people at the conference?
No – 5 (38%)
Yes – 8 (62%)
Would you like to come back to the SAFA Network
workshops at the BFSS conference next year?
All said yes!

5. Other Questions… What was your favorite workshop?
What did you like most about attending the conference and SAFA workshops?
What would you like changed for next year?
What is one topic you would like to see at next year’s conference?
What was your favorite workshop? (n = 14)
Dan Dubovsky how the brain works.
I liked Morgan Fawcett because it was hands on.
The voice of Self Advocates with FASD in action
The FASD one to help ourselves.
M and M
Living with an FASD (3)
All-Getting to Know You-Self Advocacy, Indian flute, FASD
Morgan Fawcett
What did you like most about attending the conference and SAFA workshops? (n = 14)
The chance to learn from different people.
Meeting the others living with FASD and parents. Poster sessions and tools already developed for education.
The enthusiasm of the group, their great ideas, their respect for each other
The ideas and information was very helpful. It was great to be understood.
I got to interact with other FASD advocates.
Seeing other people that have FAE and FAS like me.
What would you like changed for next year? (n = 14)
More SAFA meeting to get to know people better.
Our workshop- The Voice of SAFA network didn’t get to be completed. We need to redo next year.
Someone to give a summary (brief and concrete) of the plenary sessions so that it is not necessary for self advocates to sit through long technical presentations. Perhaps this could happen in the morning. I would also like to have the Self Advocates do a Plenary Panel, talking about the larger group and the events they have been involved in, in their own state.
Could the self advocates be more towards the beginning of the conference
The FASD advocates need to hangout more.
More breaks between groups.
More time for the self-advocates to speak.
Some people work better at different times of the day it is important to remember this and compensate for it.
More advocates
Add additional people. Have SAFA members present to general session.
More about what we need to do as advocates.
Instead of attending location big sessions and gearing stories from one person per workshop I'd rather have networking circle time. Where all share.
Time for parents to share - network- without the kids.
More inner-discussion between members would be great.
What is one topic you would like to see at next year’s conference? (n = 13)
Funding options/opportunities/needs to support living (waivers, SSI vs. SDI, personal care attendants, group homes specific to FASD needs.
How to be a contributing member of your FASD State Task Force
Healthy Relationships, how to deal with the justice system, self employment.
Self advocates in action.
Job skills
Relationships
Have more ways to help each other like sponsor.
Help advocates to identify examples of their disability i.e. sensory integration-light behavior
Giving a presentation. How to be a good self advocate. Doing a PSA with SAFA.
Advocates express what's not happening as far as how to cope with living in the home setting.
Practical and useful speakers to teach us useful information we can take back to the community, have copies of brochures, CDs of PowerPoint's, and information packets to bring back to community for the people that couldn’t attend.
Job skills, relaxation techniques along with identifying stress factors, taking medications; working with money -I found a good way to teach Sarah this topic, worked with Sister Suzette to include in curriculum.
I would like to hear about what teachers/professors should know and what they should do in the classroom to help those with an FASD.
We need Dan Dubvosky's presentation on how the FASD brain works (see Living with an FASD) on video to share with others. As the self advocates go out to teach, this would be so helpful. Meeting for caregivers to share and presentation on caregiver skills.
Have sessions videotaped for the next conference. I would like to see a workshop (but not a group session) for support persons that is presented by advocates expressing what we need from support persons and what behavior does not have a positive result. Coping skills. For example: Advocate is Angry and clearly upset. Support Person gets in their face or follows them. Result: the result is the advocate gets even more upset and behavior escalates.

6. SAFA Exhibits & Presentations
The Arc’s National Convention Denver, Colorado September 17-19
National Federation of Families for Children’s Mental Health Washington, D.C. November 18-20
TASH National Conference Atlanta, Georgia November 30-December 3
Another big goal of our project is to get the word out about who the SAFA Network is and try to get more people involved. One way we do this is by exhibiting at different conferences. Exhibit just means to show a poster or hand out brochures about your agency or project at different places.
We have decided to go and present or exhibit at these 3 conferences which are listed on your screen.

7. What SAFA Can Do For You! You Can Learn…
Why self-advocacy is important
How to advocate for yourself and others
Now we will get into talking about self-advocacy. This is the presentation Jasmine, Dianne and Leigh Ann gave at the BFSS conference, but didn’t get to complete, so we thought we could finish it now!

8. You Can Learn… How to work together to achieve a goal
How to work with others
How to support each other in reaching a shared goal

9. Ways to Advocate for Others
Hold a meeting to talk about
issues people with FASD are
having in your community
Decide as a group you want to take action, and everyone as individuals can work on the same issue

10. Ways to Advocate for Others
Teach the public about FASD
so they can understand the issues (visit local schools, police or legislators)
Find facts/information to support your cause (things like reports or personal stories)
Try to change laws, or get new ones passed

11. FASD Center Trainer’s Update
Explained the Self Advocacy Project
Passed out Brochures
Encouraged them to suggest someone to be
a Self Advocate from their state
Displayed poster from BFSS conference
People from all over the United States, 95 of them, who do trainings and workshops on FASD

12. Self Advocate Retreat Ten adults with an FASD will meet for
two and a half days at a camp in Michigan
Attendees will be from Ohio and Michigan,
Unable to find any from Indiana or Illinois who were able to join us.
Ed Riley will speak about brain differences
Pat Carver from Arc Michigan will help us learn strategies for becoming an advocate

13. Retreat continued
Another workshop will be on coping with fear frustration and anger
Another on What to Do If Stopped by the Police
Will also have horseback riding, high ropes, swimming and boating, campfires etc.

14. September 9, International FASD Awareness and Prevention Day
September 9 Concert
John McAndrew
Children and Adults with an FASD will give out Snicker cards

15. How to Achieve A Group Goal
A goal is a plan for the future.
Group goals are about changing
something that affects a whole lot of people.
One of SAFA’s group goals is to make sure every state is represented by someone with an FASD.
What are some STEPS we need to take to achieve this goal?
HOW are we going to teach try to make sure each state with an FASD State Coordinator’s office has a person with an FASD involved with their efforts? How can you become the self-advocate FASD representative for your state/region or community?
Here is your first step:
Call your FASD State Coordinator and introduce yourself, set up a call or meeting, and brainstorm ways you can get involved in state-level advocacy. Here are some ideas you can give:
Speak with your state coordinator at various functions about how having an FASD affects your own life
Volunteer your own input/experiences/expertise and create fliers or other publications that advocates for your cause, or your state’s cause.
Find out ways to get active on state committees, workgroups, advisory groups/task force, etc.
Make sure that when the state is applying for various grants that people with an FASD are included

16. How to Figure Out A Goal Decide WHO will do WHAT and by WHEN
Who will follow up?
CELEBRATE when we reach our goal!
Let’s pretend we are working on STEP TWO: Write a fact sheet about self-advocacy to give out to other people with FASD.
What are some tasks we need to do together as a group to make this happen?

17. Working with Others Is my voice being heard and valued, how do I know?
How do I respectfully disagree with someone?
What if I don’t understand something, or someone is talking too fast or using words I don’t understand?
What if I don’t like someone else, but I still have to work with them?
Many of you have already worked with others doing advocacy work, or at your jobs, or in you families. Let’s talk about how you handle this situations or questions.
Is my voice being heard and valued, how do I know? How do you know if you voice is heard, and if what you say is taken into account? Sometimes you may need to say something more than once, but it’s important to always say it in a respectful way that doesn’t hurt someone else’s feelings. You may even want to say, “I don’t feel like I’m being heard right now, how can I say this differently to you?” Sometimes people may not agree with you though, or they may have a different opinion, which leads to the next bulleted question….
How do I respectfully disagree with someone? We are not always going to agree with someone, and others will not always agree with us…that’s OK and to be expected! Have you ever disagreed with a friend about something, how did you work that out? When you are talking with a support person about making decisions about your own life, there may be some disagreement, so what do you do?
Stay calm, keep your voice down and stay respectful to the other person (or group)
Repeat what you said, and maybe in a different way, to help the other person (or group) have a better understanding
Remember that no one person is right or wrong, we all just have different ways of looking at things, and so we all have different opinions about things
Talk to another trusted friend or support person about the issue to get their opinion about it
What if I don’t understand something, or someone is talking too fast or using words I don’t understand?
What if I don’t like someone else, but I still have to work with them?

18. How Can We Support Each Other to Meet Personal Goals?
What is one personal goal you would like to accomplish with the help of the SAFA Network? Some examples may be:
To get better at speaking so I can speak at one function this year about how FASD has affected my life.
Is there a goal you have, or something you want to achieve either personally (I want to speak at at least one function this year), or in your local community (I want to advocate with my local FASD organization)?

19. Examples of personal goals:
Become active in supporting or changing a law that affects people with an FASD in my community. (Contact one local organization who can help me do this).
Speak up at least one time at a meeting about FASD.
Please send your goal to Leigh Ann Davis at so she can send the list of goals to the group.
How can WE help YOU achieve your goal?

20. SAFA Network Members Unite: How YOU Can Make a Difference
Planning for the BFSS conference
Upcoming webinars
(We want to hear from you! Share your story with us!)
What do you want to learn about?
Examples: Employment, More about self-advocacy, How to stay safe in the community, Learning about your state FASD Coordinators, Building friendships, etc.
How to get involved in the planning of next BFSS Conference:
Let us know if you may be interested in speaking at the next BFSS Conference for the SAFA Network track of workshops.
How to get involved in future webinars:
One idea is to ask one person to share his/her story per each phone call. Each person can create a 3-5 slide show and send it to Leigh Ann so we can use it on our future calls. Let’s start with Rob and Jasmine, then go from there. We can help each other write our own stories so we are prepared to share them with others.
Let us know what topic is most important to you, do you have any ideas for speakers, or would you like to speak?

21. Questions? Comments? SAFA Project Coordinators Rob Wybrecht
Jasmine Suarez
O’Conner
SAFA Project Liaison Leigh Ann Davis